Update

Things are still going well. I have been feeling pretty good for almost two weeks now. I did a senior photo shoot yesterday and had very few problems. I was even able to get up on my short person stool with no problem. I didn't exactly leap onto it in a single bound as I used to, but it wasn't quite the challenge that it was a few weeks ago. Hopefully we can keep the symptoms away for a long long time.

I will not likely be blogging over the next week. My sisters are coming to visit from Georgia. Yippee!!!

You can read more about their visit HERE.

Update

I just wanted to give everyone a little update. Nothing clever, I don't have time for clever right now. I have been locked up in a dark room editing senior pictures for the last week so I am far behind on my every day tasks. My two sisters are coming from Georgia to Ohio for a visit next week and I have to get caught up so that I can enjoy their visit.

Last week was a very good week for me physically. No real pain, no real numbness or any other weird thing that MS does to you. The walk is still not perfect but definitely getting better. I had two doctors appointments. One with my hematologist ( he set me free) and one with my family doctor. My family doctor made an appointment for me at Cleveland Clinic. I can't get in until Jan. 2. If I don't get in to see them until then, it will be four months since my attack. It takes six months for any MS medicine to really start to take affect, which means it will be ten months from the time I had my first diagnosed attack until medication starts to help me. That doesn't even take into consideration that in hindsight I suspect I have had MS for well over a year. I don't know if I am willing to wait that long. Having MS is like playing Russian Roulette. You never know when or where a lesion will happen and if it is in a relevant spot it could cause you to be unable to walk or talk or breathe or eat. Do I want to gamble like that? I feel like a walking time bomb! We have a local MS specialist and I am toying with the idea of trying to see if I can get in at her office sooner than Jan 2. These people are messing with my life here!

So far this week I have had a little pain but nothing unbearable. The electrical shocks kept me up all night two nights ago, this time in my legs. Yesterday I had them in my right hand. I stayed up until 3:00 Saturday morning editing pictures for a girl, so Saturday wasn't my best day, but overall it has been a pretty good past 10 days. I have too much work to do to sit here. I will check in again soon.

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Disposable Children

(This isn't going to be pretty, so some of you may not want to read this.)

What is wrong with people? How can they possibly think that their children are disposable? I am not going to mention names to protect the innocent, but I am really pissed off. When you have a child, you make a commitment. You had a choice, have it or not have it! If you chose to have it, then you need to freakin' step up and be a parent. Children are not disposable. You don't get to get rid of one just because it is broken. Odds are, if its broken its because YOU broke it, so by God, you need to step up and fix it. You don't get to ship them off to someone else in their teen years just because it gets more difficult. Weren't you a miserable mouthy teenager once too? You don't get to shuffle them around from person to person like they are of no importance. You don't get to bail on this responsibility. They should lock people up for this! There should be consequences. You don't get to throw a high school student out of your home just because they turned 18. What are they supposed to do? They are not freakin' DISPOSABLE!!!

They are yours. They are your responsibility. They are learning what you teach. If you teach them of how little importance they are, they are going to feel worthless. If you teach them to bail on adult responsibilities, they are going shirk their own adult responsibilities. What kind of example are you setting and do you even care? Apparently not. I can't even imagine what it must be like to feel like no one wants you. One parent/guardian puts you off on someone else because they can't handle being a parent. Then the next parent/guardian throws you out and then you have to go back to where you weren't wanted in the first place. What kind of life is that for a child? What kind of life is this child going to have? How much self-worth is he or she ever going to feel? What is WRONG with people? You had a choice to have sex or not have sex. You had a choice to have the child or not have the child. If you are going to bring a child into this world you better make damn sure you are ready to step up and be a parent. YOU DON"T GET TO JUST GET RID OF A CHILD BECAUSE YOU DON"T FEEL LIKE PARENTING!

CHILDREN ARE NOT DISPOSABLE!!!

A Better Day

Today was a better day. I didn't have to have any torture today. I still had a bit of a headache but felt fairly well for most of the day. This afternoon I have been struggling with balance but over all it wasn't a bad day. I was able to get some photo editing done today. It has been hard for me to edit lately because of my eyes. I started having trouble focusing later this afternoon and that was my sign that it was time to walk away from the computer. This is one of the things I was working on.

Getting Through Today

I am trying to deal with my MS one day at a time. It isn't always easy. Today is the second bad day I have had in a row. My legs didn't want to do their work yesterday and I was in a cranky mood most of the day.

I slept very well last night, the best I have slept in quite a few days, but I woke up feeling sluggish and heavy-headed. I have a headache and my eyes are pulling. My left eye seems to want to be more blurry than usual. I feel a bit dizzy and my facial numbness is back today. I just want to go and curl up somewhere and watch a movie or take a nap. I can't. I have to go to the hospital this afternoon to have a mammogram. Yippee. I am just going to say it...Titty Torture! I can guarantee you that if a man had to throw his penis on a table and have it whacked with a hardback book to screen it for cancer, scientists would have already figured out a kinder gentler way to do that test!

I am so not in the mood for this today!

Have it Your Way!

(Jenny & Missi, you thought I was kidding didn't you?)

Yesterday my pseudo-daughter (my pseudo-grandchildren had to come from somewhere) and her good friend, who has now also become my friend, came for a visit. We had already decided to go to good old "Have it Your Way" Burger King because we had two little guys with us. Did you ever try to have a conversation with two bored small boys sitting at your lunch table? If so, we don't even need to explain why we chose Burger King and their play area as a place to have lunch.

As I have mentioned before, MS is a surprise each and every day. Yesterday was a difficult leg movement day and I'm not sure whether the fact that my legs were lazy made me annoyed or if I just started out annoyed and the legs were just a bonus. Regardless of where it started, yesterday probably wasn't the day for Burger King to mess with me.

How long has "Have it Your Way" been their slogan, catch phrase, jingle etc? Well I decided to have it my way yesterday and they wouldn't let me. They have a new Mushroom Swiss Burger on their menu. I am not a huge beef fan but will manage to eat a BK cheeseburger occasionally since the quantity of actual meat is very limited. I usually order a kid's meal if I eat at any of the fast food places. I figure, minimal amount of damage if I eat small. All I wanted to do was order a kid's meal with a cheeseburger and have them switch the American cheese to Swiss cheese and throw on some mushrooms. This should have been no problem for the "have it your way" Kings. WRONG!!! They refused to do it! Arby's will add Swiss cheese to a kids junior roast beef and never flinch. I almost always ask for something slightly different when ordering at one of these places and it never trips anyone up. BK couldn't let me order what I wanted to have because the COMPUTER wouldn't let them. It should have been a no-brainer. The woman behind the counter said if they did it there would be an additional charge for the cheese and mushrooms. Do I look like I care if I have to pay an extra dollar? As it turned out, it would have been Missi's extra dollar but I really don't think she would have cared either. Instead of letting me have it my way, which I really don't understand at all since it is all they FREAKIN' say in any commercial they do, they just made me mad and lost a customer. I'd rather have a McDonald's apple pie anyway!

Here's the phone number for our Burger King. Call them and tell them what a joke their slogan is since a person can't even get Swiss cheese and mushrooms added to a regular hamburger!
(330) 545-3127 Do it, I dare you!

Landslide

I have always loved the song "Landslide" by Fleetwood Mac. I even liked the version done by the Dixie Chicks, although it wasn't the same as hearing Stevie Nicks sing it. Last weekend when we were at a wedding reception the DJ played the Fleetwood Mac version. As I was making my way around the dance floor in the arms of my husband, my lover, my best friend, the words to that song smacked me right in the face.

I am a singer. There is not a day that goes by that I don't sing. I may make up a crazy song to sing to the cat or sing along with the collection of music I have on my computer, but I can guarantee you that not a day goes by that I don't sing. I also sing to my husband as we are slow dancing. I always have. As we were gliding around the dance floor (OK, maybe not really gliding since the MS came to visit, but I still want to believe we were gliding, so let me have my way) I was singing the words to Landslide along with Stevie.
When it got to the verse
"Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail through the changing ocean tides
Can I handle the seasons of my life,
Hmm Hmm, I don't know
Hmm, Hmm"
I sort of changed the words a little bit. Instead of "I don't know", I emphatically sang HELL NO!!!! My hubby laughed out loud at my declaration.

I have loved this man for more years of my life than I have lived without him. I met him at age 23 and we have been a couple now for 26 years. If at age 23 you had asked me if I could possibly love him more than I loved him at that given moment, I would have told you that it wasn't possible. I loved him so deeply there was no way I could love him more. If you asked me now, at age 49 if I could possibly love him more, I would tell you yes. That tomorrow I will love him more than I do today, because with each and every day that we share, with each and every moment that I love him, I know that tomorrow I will love him even more. He is my compass. He is my life. For him, I will always find my way home. I have built my life around him.

Landslide (as sung by Fleetwood Mac)

I took my love, and I took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down

Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail through the changing ocean tides
Can I handle the seasons of my life,
Hmm Hmm, I don't know
Hmm, Hmm

Well, Ive been afraid of changing
Cause I've built my life around you
But time makes you bolder
Children get older and
I'm getting older too, so...

I've been afraid of changing
Cause I , I built my life around you
But time makes you bolder
Children get older and
I'm getting older too,
I'm getting older too

So, take this love, take it down
Oh, If you climb a mountain and you turn around
If you see my reflection in the snow covered hills
Well the landslide'll bring it down, down

And if you see my reflection in the snow covered hills
Well maybe, the landslide'll bring it down,
The landslide'll bring it down

Red, White & Blue

When you are already reeling from a recent MS discovery, driving up to a building with a big sign out front that reads The Blood & Cancer Center is probably not going to make you happy. I knew I was going to see a hematologist. I did not know that his office would be in the Blood & Cancer Center. That sign might as well have been a giant flashing neon sign. The impact it had on my mental state when I saw it was overwhelming. My heart started to beat faster and I swear, I could barely breath. My legs were weak...Oh yeah, sorry...They were weak before I got there. (MS joke)

When you are going to see a hematologist you assume that you will be keeping your clothes on and that they will be drawing blood. Wrong! The first thing they did was tell me to take off my clothes from the waist up. Excuse me...what do my bare breasts have to do with my blood? Chalk up another one for humiliation.

As I sat there on the examining table in my beautiful open-front hospital gown, tears began to stream down my face. I wasn't prepared for this at all. Not for the BLOOD & CANCER CENTER and not for being bare-breasted anywhere but my bathroom, my bedroom and my gynecologist's office. I was emotionally prepared for needles, not nakedness! You have to work up to these things.

The doctor was very kind and full of the normal questions like "When was your last period?". He used my lymph nodes like a road map, even the ones in my groin area, which again, not prepared for. Next time give me directions, let me know what to expect. Seriously!!!

Eventually they did suck a few tubes of blood out of my arm and the results were good. My white blood count was back to normal. I guess I am not dying of cancer today. The Infectious Disease doctor who saw me while I was in the hospital, (because of my high white blood cell count) mentioned something about consistent elevated white blood cells being a precursor to Leukemia. Why put that in my head? I don't understand that about doctors. Just because you know it, doesn't mean you should always say it. I don't really want to know that I might get Leukemia, I only want to know if I have it!

The next stop, Cleveland Clinic. This time, I am asking what they are going to do to me before I get there. A woman needs to be prepared for these things. A lesson I should have learned when I showed up at the emergency room wearing red panties.

In Sickness and in Health...

My husband and I spent the weekend in Springfield, Ohio, a town about 3 1/2 hours SW of us, to attend the wedding of the son of one of my husband's dearest friends. It was a lovely town in spite of far too many one way streets for a town its size. Our hotel room overlooked a beautiful fountain that sparkled like trickling diamonds at night. Directly across the old brick roadway which surrounded the fountain was a huge building that was constructed in 1890, Springfield's market place and city hall. Made out of brick and sandstone, with a magnificent clock tower that struck on the hour, it was truly a delight to see. Railroad tracks ran along the back of our hotel, tracks that are still in use and the wailing of the train whistle as a train blew through town was charming by day, not quite so charming at 3:00 AM.

This was our first trip since I was diagnosed with MS. Overall it went well, with the exception of my meltdown at the reception and the sensible shoes that wouldn't stay on my feet.

When MS is already affecting your gait, you must choose your shoes wisely. I am still able to walk, and when barefoot or wearing flats I can fake a fairly steady walk for short spurts at a time. I chose my shoes for the wedding wisely, or so I thought. They were lovely "strappy" black shoes with a small heel that was wide enough for me to maintain my balance and a heel strap to hold my foot in place. All I can say about those shoes is "What moron designed them and did anyone try to walk in them before they decided to put them on the market?" The point where the heel strap attaches to the strap that goes across the top of your foot on the side that buckles, had nothing to anchor it. It was free-sliding so that when you first put it on, and get everything situated it feels fine. After about ten steps the heel strap starts to slide down the strap that goes across your foot and in a very short while the heel strap falls completely below the heel since there is nothing to hold it on place. It is hard to describe, but trust me when I say they were very poorly designed! I spent most of the night struggling with my shoes which isn't such a good thing when you are already struggling with your emotions.

Combine bad shoes, MS and walking, and there was indeed walking involved...much more than there had to be...Cari clears throat and shakes her head at the poor navigational skills of some certain people who will remain nameless...and you get the evening started off on the wrong foot. (Pun fully intended!) I was exhausted before we ever got into the reception hall. We were assigned tables and I intentionally chose a seat which faced away from the dance floor, hoping that if I couldn't see it, it wouldn't make me sad.

I held up fairly well through the first part of the reception, although I'm sure I wasn't my normal sassy self. The only walking involved was the buffet line, which to my delight had accommodated those of us who aren't meat-eaters by having vegetarian lasagna on hand. Big points scored for the bride and groom! After the traditional bridal dances were complete the DJ decided to crank it up with The Commodores, Brick House. For me, that was like having a ton of bricks fall down on my head. The realization that I would never be able to "Shake 'my' Groove Thang" on a dance floor again was just more than I could take. I seriously couldn't hold back the tears. To some of you, this may seem trivial. For me, it was like a bomb going off. I swear I could hear ringing in my ears! The tears started to flow and I couldn't get out of there fast enough. My wonderful husband helped me make my way out into a hallway where I actually sobbed over the loss of my "Groove Thang". I felt like a part of me had been ripped up into tiny pieces and carried away by the wind. My Electric Slide has left the building!

There were a few people at the wedding who know what my husband and I are dealing with, but for the most part, the people who saw my hubby and me in the hallway probably just thought we were fighting. This MS has taught me a thing or two. 1. People who are wobbling aren't always drunk! 2. We don't ever know what someone else is dealing with in their lives so we shouldn't be so quick to judge their behaviour. What looked like a lover's quarrel, or me just being a big baby or even a witch was actually me mourning the loss of a part of me.

During the actual wedding ceremony, as the new bride and groom were repeating their vows it once again hit me how very much my husband loves me. He has really had to step it up this last month and has done so with barely a stumble. Those words... for better or worse, in sickness and in health... are not to be taken lightly. In the 24 years we have been together we have had better and we have had worse. We have had sickness and we have had health. Most of all, in spite of success and failure, in spite of mistakes and accomplishments, we have had love. Big love, once in a lifetime love. Love that completes each other's sentences. Love that tries to shelter the other from pain. Love that after 24 years, still makes my heart skip a beat.